They See What's in Your Genes

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They See What's in Your Genes

NEW YORK – Genetic information stored in a biotech company's database could help researchers cure disease, but privacy is an unavoidable concern.

While most of the conference speakers at the BioSilico 2000 conference here used their time as a forum to tout their companies' myriad technologies, some on Friday addressed how they deal with the issue.

DeCode Genetics of Iceland, for example, has no choice but to think about privacy. Personal and private information forms the core of its business.

DeCode researchers are using a combination of Icelandic citizens' genealogy and genetic information to identify causes and cures for disease. The company revolves around a project to create a database containing medical information about every citizen in the country.

The most common and widespread diseases are usually caused by a combination of influences – genes, then environments, or both working together, said Kari Stefansson, president and CEO of DeCode. That's why it's important to study genealogy as well as the genes themselves.

"Human genetics can be tremendously empowering but there are some societal questions that need to be answered," Stefansson said.

Addressing those questions, DeCode gets informed consent for any actual genetic material, such as blood samples, that it uses.

"Not a single genotype has been used without informed consent from patients," Stefansson said.

In the course of its research, DeCode has traced asthma running in families back to 1651. By cross-matching such research with genetic information, researchers at the company have also made important discoveries about psoriasis, Alzheimer's, myocardial infarction and schizophrenia.

DNASciences, a company doing a similar project in the United States, is soliciting genetic samples via its website in order to recruit people and group them appropriately for clinical genetic studies.

Founder and CEO Hugh Reinhoff said he believes patients are behind DNA Sciences' efforts because consumers like the idea of participating in something historical, and his company is dealing directly with patients in the hopes of making scientific discoveries.

"There are more scary stories than good ones out there, and we need to focus on the good," he said.

Reinhoff said the company has made every effort to take the patients' side of the arguments.

Stefansson said he believes it's possible to be too careful. The paranoia surrounding the privacy of medical information, while not entirely unfounded, could backfire and endanger good heath care.

"I insist that this may actually constitute a breach of an implicit social contract," he said. "Patients have always allowed us to use health-care information to discover new information about health and disease. If our parents hadn't, we would not have health care as we know it today."

Both agreed that people who suffer from disease are eager to volunteer their personal data, despite privacy issues.

"My experience is that patients are not particularly focused on privacy," Stefansson said. "They're focused on the disease and the hopes and aspirations they have."